Is ME due to Ehlers-Danlos Syndrome "stretchy veins"

Sharon,
Thanks for your excellent input. I happen to agree that most ME/CFS is rooted in some form of connective tissue disorder (I hesitate to use the term EDS, because it has so many variations!) Your posts present a strong case. It is just so damned depressing, because there is no pharmacological way to treat something as widespread as weak tissue syndrome.

Just to be clear, I am Ot saying that ME AND EDS are the same. It has taken decades for everyone to figure out what is going in with me. If you have chronic pain, ask. See if this fits you. Just because you are Ot hoer mobile does Ot exclude EDS, you could have the skin toe or vascular (which can be life threatening). I want to share as I was probably one of the earliest person in the USA tested for NMH , other than the study participants. The abstract came out, I ran to a cardiologist who told me no way, that was an old persons disorder. I explained I had always passed out and eventually learned to predict when and lie down, sometimes in the middle of a store, to humor me, he Gave me the to test. I did not know Ot to eat and had coffee, which raises Bp. I passed out in 6 seconds, before medication. Went on meds, retested and passed out in 90 seconds. Dx was nmh, worst case he had ever seen. Tough living in a warm climate. I evolved into fm do and cries/me, seizures, Chiari I, and now eds. As stated earlier if you have EDS you do not have FMS. I thought the neurosurgeon was ridiculous when he said this, I had going to see a rheumatologist for almost 20 years who used to run the arthritis foundation. How would he have missed EDS and called it FM. Well. He did...if you are in chronic pain, as I am, severe , I wanted to share the information. I have no need to be right here . Many symptoms overlap, exercise intolerance, fatigue,and orthostatic I tolerance. You definitely want to rule out vascular type if EDS as there are surgical contraindications and reasons to have a cardiologist intro the aortic artery annually. Feel better all.........

Sharon,
Thanks for your excellent input. I happen to agree that most ME/CFS is rooted in some form of connective tissue disorder (I hesitate to use the term EDS, because it has so many variations!) Your posts present a strong case. It is just so damned depressing, because there is no pharmacological way to treat something as widespread as weak tissue syndrome.

justy,
hypermobility is classic symtom of EDS ; but i do not have it - hypermobility all. There is a spectrum - some people have all the syumpotms and signs some have a few; i have none except varicose viens and history of feint and migraine in adolescence. But needing to sit with your legs up is interesting; i used to be like that but after 3 years of forced exercise i have deteriorated; but if you crash do you not need to lie flat?
I am chasing up the symptom overlap now; there was a good list circulating on Me cfs forums a while back for ME and my speciallist has just been to and EDS conference and showed me his list of their symptoms and they seemed so similar - such that he thinks it is the same disease - but i do not have hard copy. They were geneticists at te conference apparently looking at EDS in kids but my OI specialist says he is seeing hundreds of patients with similar symptoms...and they are a huge range of symptoms including almost all possible gut issues.

CARDIOVASCULAR Possibility of aortic root dilatition, mitral
valve prolapse, other valvular abnormalities,
enlarged right coronary artery. Postural orthostatic tachycardia,
leading to chronic fatigue, is especially
found in young persons with EDS.
Some doctors have seen onset of lipid
abnormalities in EDS youth; in any case, attention to heart health should begin early.
GASTROENTEROLOGY
Irritable bowel syndrome with constipation and/or diarrhea, reflux, food allergies, gastroparesis.
RHEUMATOLOGY & ORTHOPEDIC
Joint hypermobility can be assessed using the Beighton scale; however, joint hypermobility also depends on age, gender, family and ethnic background.

Well more than three, but three common types of he rare genetic disorder.....confirms that pt should do stretching not strength training. Opposite of what most pts will want to do. Luckily mine has an EDS diagnosis herself and gets exercise intolerance.....

It is not a spectrum. The test is called beighton abound just like FMS , you need so many to get the diagnosis for the HYOERMOBILE type. The Beighton Score is a simple validated system used to quantify joint laxity and hypermobility. If you think you may have hypermobility, you can check your Beighton Score using the table below

Give yourself 1 point for each of the simple tests that you can do, with the maximum score being 9 points. Most people score less than 2, and only three to four in a hundred healthy people score 4 points or more.

Test Points
Able to put hands flat on the floor with knees straight 1
Able to bend left elbow backwards (hyperextend beyond 10°) 1
Able to bend right elbow backwards (hyperextend beyond 10°) 1
Able to bend your left thumb back on the front of your forearm 1
Able to bend your right thumb back on the front of your forearm 1
Able to bend you left little (fifth) finger back beyond 90° 1
Able to bend your right little (fifth) finger back beyond 90° 1
Able to bend your left knee backwards(hyperextend beyond 10°) 1
Able to bend you right knee backwards (hyperextend beyond 10° 1

Sharon,
Thanks for your excellent input. I happen to agree that most ME/CFS is rooted in some form of connective tissue disorder (I hesitate to use the term EDS, because it has so many variations!) Your posts present a strong case. It is just so damned depressing, because there is no pharmacological way to treat something as widespread as weak tissue syndrome.

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Yes, there is no treatment. It is a ole ten issue. Unfortunately, there are precautions. No chiropractic date, no contact sports. Check out the pain management brochure if you have chronic pain......I agree, no cure, just management.

I have EDs III and OI and symptom patterns as you described from being upright, but, for me anyway, more is going on since I also have some viruses, infections, gut dysbiosis and infections, messed up immune system, messed up HPA etc.

Yes, position matters but I think more is going on. And there are many here who don't have EDs, but are still sick. I kind of see EDs as part of the predisposing genetics for some of us.

And if your doc thinks EDs is at the root, how does he propose to treat it? That seems to be the kicker. We can try to increase collagen but we have some genetic errors. I also inject B12. Did your doc mention the probably "floppy" vein valves in the legs? Just like the floppy heart valves.

Best wishes,
Sushi

P.S. Somehow your post came through in tiny type--almost couldn't read it. Maybe you could edit it and increase the font size?

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The gut is an EDS symptom. There is no treatment, just management. Again, I am Ot saying it is be cause, just want people to rule it out due to the needing cardiac monitoring if you have vascular type.

I like what Mish Mash said. I agree that sometimes the most simple and obvious solutions are what is going on. If you read some of the theories on this website....sorry....but they are just absurd. I do think the EDS has some merit, or may lead in a direction that could give you some functioning back, just knowing what's going on and what makes it worse vs. better. I think that for some people, this COULD (but what do I know?) very well be a big issue. I think that not everyone on this website has the same disease, and we should all keep that in mind! Sorry to say, but no researcher grouped the people on this site....some of us will not have the same cause as others. We should all be vigilant to try to figure out if we actually have X, not Y.

My grandmother is actually blue and purple on her arms and legs, under the skin (her skin must be very thin), from bruising so easily; the bruises have just run together. That is an EDS thing, from what I gather. And she is "like me" with fatigue, so I am almost 100% positive she has EDS, but has never been diagnosed (and I don't talk to her, so can't really get her help, it's more of a moot point). Now that I think of it, my great grandmother may have had a little of the same bruising. I don't have that symptom, so far, but I have been told I have the stretchy vein thing by a specialist in dysautonomia. He said that my veins have too much collagen, so they are basically "stretchy," and so my blood doesn't pump up to the brain effectively. The doctor didn't go so far as to diagnose EDS, because he said it's genetic, and the genetic testing wouldn't change the fact that I DID have hypermobility syndrome, so he would treat no matter what. The extra collagen is also why I am super flexible. I would have liked to have the genetic testing, but I guess he wanted to treat no matter what, and not bother with more testing.

That doctor treated with Midodrine, but I couldn't get him to try Florinef before I stopped seeing him. He also preached avoidance of any drugs/substances that can make blood pressure lower, like the Trazodone I was taking for sleep. I think many things can make it worse, there is a list on dysautonomia websites of drugs that could make the condition worse. I personally have noticed that coffee helps me, seeemingly moreso than just a stimulant, so I think it actually helps my blood vessels and helps blood go upwards. A vasoconstrictor. But some with this condition find it makes things worse.

The other thing this doctor preached was strengthening the muscles of the legs. He said that when you have more muscle, especially in the lower half of your body, you will be better off with moving blood upwards.

Anyways.....for me, I think glutathione/B vitamin issues, like what Rich describes, are more of a factor. But, you just simply never know.

4) If symptoms have not improved or have become worse ask your doctor to check you for Diabetes Insipidus (DI). (This is not the same condition as the more familiar Diabetes Melitus in which the pancreas does not produce enough insulin. Diabetes Insipidus results when the pituitary or hypothalamus are not functioning normally. The only thing the two conditions have in common are the symptoms of excessive thirst and frequent urination.)

If the DI test is positive, Cheney usually treats it with Vasopressin nasal spray. Cheney finds that about 50% of CFIDS patients show low-level DI. (Not surprising, given that the HPA axis - hypothalamus/ pituitary/adrenal - is suppressed in CFIDS.) Low level DI might respond to salt and water and licorice treatment. High level DI will not respond at all to those treatments, and without Vasopressin those patients cannot keep their blood volume up high enough.

Note: Dr. Cheney has found that Florinef is not a good treatment option for NMH in most CFIDS patients. Florinef forces potassium depletion and further suppresses the HPA axis, which is already suppressed. Initial short-term benefits are seen with Florinef, but they degrade over time. With extended use Florinef actually exacerbates the disease in many patients.

diagnosis isbasedonsymptoms as well as personal/family medical history. Your doctor will examine your joints and skin and ask you some questions. You may be referred to a geneticist for further evaluation. Hypermobility or Classical Types of EDS are diagnosed by comparing your symptoms and history with established diagnostic criteria.
If Vascular Type EDS is suspected, your doctor may order genetic testing for this specific type.
HOW IS JOINT HYPERMOBILITY TESTED?
Your doctor will assess joint movement using the Beighton Scale (shown at right). One point is scored for your ability to perform each maneuver depicted. Left and right limbs are each scored separately.
A score of 5 out of 9 (or greater) indicates generalized joint hypermobility.
HOW IS SKIN EXTENSIBILITY TESTED?
Your doctor will check skin extensibility by pulling the skin at a neutral site until resistance is felt.
HOW IS VASCULAR TYPE EDS TESTED?
A blood test or skin biopsy may be performed to confirm or rule out Vascular Type EDS.
SKIN CONDITIONS
Suturing may be difficult if fragile tissues tear – use of proper techniques can minimize scarring. Skin should be protected daily with sunscreen.
HEART MONITORING
All types of EDS patients are recommended to
have baseline and periodic echocardiograms,
plus CT imaging of the aorta, to monitor for aneurysm, enlarged aortic root, or valve

The gut is an EDS symptom. There is no treatment, just management. Again, I am nOt saying it is be cause, just want people to rule it out due to the needing cardiac monitoring if you have vascular type.

He did not say eds was the source of everything. I have a Chiari I malformation, grand mal seizures etc. just sharing that there is an overlap and monitoring of vascular system is a must .....i do not need to be right here,I am not a physician. Well all have many diagnoses. This is one that if you have, you do not want to ignore.....

He did Not rule out me/cfids, just FMS. No cure, but the pain brochure is excellent. It confirms that exercise should be to stabilize and stretch.

If anybody can step forward with a a more widely shared anatomical abnormality than "connective tissue disorder," for patients with some kind of "chronically fatiguing illness," please step forward and be heard. Obviously, there are post-polio syndrome, true Lyme disease, and other sources than can cause the main symptoms we all have. But those can be ruled out. Here we have to consider that the most obvious anatomical manifestation is probably the most likely cause of CFS. It's basic logic.

It's at least testable, for lack of a better word. I say if you have chronic fatigue, OI, gut issues and severe pain. Ask your doctor. You may have the vascular type and then you need to know,as this is life threatening.